I’m Yuriko Oda and my disease is distal myopathy HIBM / DMRV / GNE Myopathy When I was 20 years old I feel some abnormal change with my legs. And when I was 22 years old I was diagnosed with distal myopathy. When I was 26 years old I began to use wheelchair because I couldn’t walk as usual. And I had baby, so I and my husband and my baby go outside together. My name is Josh Grisdale and I’m from Canada, near Toronto originally, and I’ve lived in Japan for about eight years now. I have what’s called cerebral palsy and it means that i had brain damage when I was a kid. It might have been a high fever I had when I was about six weeks old. So after that it effected my arms and my legs so i can’t move them as I intend to. And communication between my brain and my body is the problem. My name is Minekazu Tsuchiya. I’m an office manager at STEP Edogawa. I was in a motor bike accident 28 years ago. Since then I lived with my parents and went to the hospital. I moved to Tokyo 12 years ago. Medical care and helper, Japanese government pay for us and we pay around 10 percent, it depends on their salary To add to what Yuriko is saying, there’s a cap on the monthly amount you’d pay. Additionally, if you’re low income, you’d pay less than someone with a higher one I say a benefit for me in the way that the system is set up is that it’s not necessarily distributed by the country, as much as the through the city. So if you’re living in a city and you’re registered with the city and you pay your city taxes then you’re eligible to receive the city services. And so that’s who’s in charge of sort of dispensing the helper time. And some of those accessibility services and stuff so… Even though I’m not a Japanese citizen I’m still able to receive those things as a citizen, or, a resident of my city. So it’s more residence then nationality. And it can change depending on which city you live in as well. So if i move to a different city then I’d obviously fall under that city’s situation. So that could change what services i receive and stuff so… We get assistant services for people with disabilities. It is different from the Long-term Care Insurance for the elderly. Part of the assistant service is a home helper service where a helper visits you at home. There are helper services that aid in going out or going to a hospital and so on, which are subsidized by the government. The hours you receive depend on how severe your disability is. Depending on how bad your disability is and your condition, your benefits will change. It’s really complicated to explain, but to easily say it, there are different levels. I get home care service for people with severe disabilities, which is pretty much the maximum support you can get. In order to get my benefits I applied to the Edogawa ward (city) office. Then the Edogawa ward office reviewed my application and decided how much benefits I would get. I get a 302 hours of home helper service a month. My name is Shoichi Adachi. I’m a helper. While the disabled people I met could do many things on their own, they all required aid from helpers. I shouldn’t open your closet, should I? Right, I won’t! Ah, could you microwave it for about 1 minute, please? Thank you so much. Ahhh, Sooo good! I’m really careful when I work with a person whose values aren’t the same as mine. I try to think as if I were that person, putting my values aside. I’m here to support my client’s life, so that’s what I focus on. I always remember I’m just here to help my client. By myself I can type and I can handle a ride in my wheelchair and brush my teeth with an electric toothbrush. Other activities I cannot do by myself. When I travel I (go) with (my) husband. But in my house I ask some helper to help wash dishes or laundry or clean my house. The three main types of help that i saw provided were for physical needs like assistance going to the washroom or getting dressed. Daily life needs like cooking food and cleaning. And social well-being needs like traveling outside of the home to interact with others and the world. I asked how the help was provided and it turns out it depends on the individual and the company providing the support. Since every individual’s needs differed so did the support they received. I plan my helper tasks on a weekly basis. My helper comes in the morning to help me get out of bed, go to the bathroom, and change my clothes. Then there’s lunch time, dinner time, cleaning up, and putting me in bed. I divide the day into morning, lunch, and dinner. On days that I take a bath, I’ll ask a helper to stay longer. On weekends, I’m off work , so I like to go out. I will plan my helpers’ shifts 1 month in advance. I am able to lead a life thanks to my helpers, though there are limits on what they can do to help. It’s not like I can ask them to do anything I want. Regarding hours of assistance, we have been asking Edogawa ward office for so many years. The more severe your disabilities are, the more assistance hours you need. However, Edogawa ward office can’t give us that many hours. It’s a long term problem that we have to figure out. Even with severe disabilities, you can’t get assistant services 24-7. We’d like to have more help. Going into making the documentary I didn’t quite realize the amount of care needed. So I asked Josh how it felt to have a helper with him for many hours of the day. Having a helper helps me do a lot of things obviously. But at the same time it’s nice to have personal time. And you know, not necessarily always having someone beside you. But the problem is also because of there’s a lot of personal care things I can’t do on my own. So I am limited by how long I can be on my own. And so yeah it can be kind of a fifth wheel so it can be difficult to go out with your personal friends. and have another person around sometimes. But at the same time, you know, if I need to use the washroom, I need to have that person somewhere nearby. So sometimes you get people to come with you and just wait somewhere. But some companies that dispatch the helpers they’re worried that they might get in trouble from the city if the person’s not nearby to help you. So they don’t like you to tell them to wait somewhere completely far off. So it can be a bit difficult for your personal life sometimes. As Yuriko said her husband acts as her helper when she wants to go out and do everyday activities like shopping. She finds department stores are very wheelchair accessible. This is because some of the small and older family-run stores, that were built many years ago, don’t always have the same space to accommodate wheelchairs. What should we get? Tomatoes? Tomatoes and cucumbers. I want more! Hmm… what should we get? What about the last one in this row? Tuna. The last one in the middle. This is real. As you can see in department stores, which often have supermarkets, there’s plenty of space for her wheelchair. And yeah, that’s the Ghostbusters theme song! It’s over there in the middle section. What’s also nice about Japanese department stores is they often have a section of ready-to-go food which is found on the lower floor. Can you get this, please? Yes, one please. While some older style buildings simply don’t have the space, some do have little ramps like this which help bridge the gap. It was 28 years ago when I was in the accident, and back then I didn’t know anything about the system at all. Because I was living with parents at home and living in a care home center, I didn’t know about the system. But since I came to Tokyo and started to live on my own I stared to get interested in learning the care system. If I think about it, the system has been a lot changed. The biggest change is that you can live on your own with the home help and assistant services. Talking about our office’s helper service, ours is very different from the ones at other places. We don’t call it help. We call it support. We respect the person who has the disability and how he/she wants to live life and focus on what kind of support he/she needs. That is our main focus. I feel that other helper service offices don’t really focus on what disabled people want. So they help their clients with what they think they need, not what the client says they want. The big difference is we understand their needs (because we’re disabled too). That’s the biggest difference. Money? We provide a service, so we charge our clients. We’re not doing this to making money though. We want to support people with disabilities so that they can live on their own. That is our purpose. Josh lives in a home specially adapted for wheelchairs. Actually, the whole apartment is designed to be barrier-free. Japanese houses, but not only houses, also a lot of buildings and businesses have a genkan I push a button here. So did you have to get that specially installed? Yeah, so the city, paid for I think about ninety percent of it. So in most houses in Japan, and you’ve probably seen them in Greg’s house, there’s a genkan at the front which is a step that sort of separates the outside from the inside of the house and what’s clean what’s not clean so people will take off their slippers at that point. But obviously it’s not very accessible for people in wheelchairs. So in my apartment building what they’ve done is made the genkan go away. And so instead of having an actual genkan there’s just sort of a separator in the floor type so that you can say okay this is outside and this is inside. So people take off their shoes there so it’s one of the adaptions they’ve made for my apartment. So we’ve already seen the genkan and automatic door the front. There’s a couple other things that are sort of unique to my apartment. The floor is a bit flatter than a lot of other places. There used to be a door here but I had taken out. It’s a sliding door. That’s another thing as well, a lot of places in Japan they have doors that open by pulling, but that’s obviously difficult to do in a wheelchair. So a lot of places in my apartment building , which is designed for people with disabilities, have sliding doors instead. Now I never ever cook, but if I ever was so inclined to, Underneath the sink and the gas range they’ve cut everything away, so I could pull in with the wheelchair, theoretically. But I’ve, ah, I have it filled up with garbage and beer instead so… And if we head over here… (this) is the washroom area. The bathroom is a bit bigger than normal, and also it’s got the sliding doors on it. Pull right up and use the toothbrush and I can get at the sink and everything . And in the bathtub here, they’ve added these things called a sunoko. Which sort of looks like a fence laid down on its side. And the bathtub actually goes down about, maybe, five centimeters or so. It would normally go in but they’ve built up these sunoko so that I could drive right in with my wheelchair. They’ve also got a number of different handles on stuff on the inside as well. And then moving back here… – This is Adachi-san, right?
– Yeah this is my helper Adachi-san And over here I’ve got my bed and it’s sort of like a hospital bed so you can lift up the feet and stuff like that . So the city help pay for the cost, part of the cost of my bed. On the side of the bed in that sort of tangle of cords, is the interphone and normally that is sort of on the side of the wall somewhere. But because if I’m in bed, I can’t open the door if it’s on the wall and so I was able to put the interphone next to my bed so whenever somebody comes in the morning to help me get out of bed then I can open the door. And then once when my dad was visiting he went to the local hardware store and he bought some wood and he made a fence for me, ah sorry, the ramp to go outside. This is my pet rabbit. Usha, you’re famous! I never particularly was like, oh, I really want to rabbit It was more that I didn’t want a dog because I wouldn’t be able to take care of him well enough I didn’t think. And also a cat I was afraid that if he ran away I wouldn’t be able to chase after him. And so this is sort of the easiest thing to take care of that has a personality. And so this is where I spend too much time probably, in front of my TV. Which also has the computer there so I do a lot of my work there as well as just relaxing. And I have this table that is adjustable and also movable and that you know I can use for dinner or for putting the keyboard and stuff like that so… It’s all about adaptations. So there are group homes in japan so people with disabilities will maybe live in the same house and there would be staff that could take care of their needs And these will be subsidized by the government in some way. And unfortunately that’s probably, they used to the norm, but a lot of people moving to independent living in the big cities So where they will have helpers come for a certain number of hours a day and they can do things more freely but that’s obviously depending on staff and as you move out into the country then there are fewer for people who can help. So it’s just not feasible to run some sort of independent living helping program. So people either move in to the cities or they live in a local group home or something like that. And group homes do exist inside the city as well. And so it probably, depending on the needs of the person with disability If they have developmental challenges or something like that or need some more intensive assistance then that would probably be where they go but otherwise people would maybe live on their kind of thing, so… Something I was quite curious about was how the general public treated disabled people. One of the reasons is that I used to read about Japan’s disabled being hidden away And when I started living in Japan, I’d have to say that I didn’t seem to see as many disabled people out and about as I would in Canada. What I found out, is a lot has changed in Japan over the past couple decades. I think in Canada people with disabilities were much more active in society for a longer time. So people are maybe more used to seeing people in wheelchairs. When I first came to visit Japan about 12 years ago, at that time there really weren’t as many people out in wheelchairs at the time. So I got, on top of being a foreigner of course, I got the extra, you know, looks of being somebody in a wheelchair. And, your know, I think people were not necessarily… I think it’s very intriguing and maybe encourage people I think. So at that time as I got a lot of looks and the sort of special treatment is kind of odd. But even in the past couple years, I’ve sort of, in a good way, sort of blended in with everybody else and you know it’s… people are more used to seeing people with disabilities out in the streets and in society. And so I think everybody sort of gotten used to which is a great thing I think, so… In US they know about ladies first. And they take care of child or lady. But in Japan they are samurai, samurai culture, so they don’t know how to treat (a) weak person. So I think Japanese people should know how to support more weaker person. So I think in Canada, probably, people are a bit more upfront and they’ll come up to you ask if you need help and stuff like that. Whereas in Japan people can often be quite like shy. And, you know it depends on the situation, but maybe somebody might find that the people don’t care or something like that but I don’t think that’s the case I think the other person is very aware of something but they don’t, they’re worried they might offend you or or they’re quite shy because you know if you don’t they don’t know how to react maybe like if you need help or if you don’t help so, I think maybe you might find less help in Japan, but at the same if you’re a foreigner, Then you also might find more help. So it really depends on a lot of case by case I think. But for the most part I think people are very eager to help but just not sure exactly what’s best so Maybe they are just confused And so they are honest, Japanese people are honest. But they don’t know, just don’t know how to treat or how to support disabled people. There are special school for disabled people. So they cannot go (to a) regular school. So they’re separated between normal kids and disabled kids. So kids don’t know how to support disabled kids And become adult. It’s very program, sorry problem. Yeah so that’s a an area where I think probably Japan needs to work a little bit more on. There are a lot more separate schools for people with disabilities. In Canada when I was growing up there had been separate schools, but my mom worked really hard to make sure that I was always included with everything. And so when I went to kindergarten, I went to a normal school and I grew up with the same kids up until elementary and then high school. And so I attended a normal school and there were maybe, in our area, there’s a class that was specially dedicated for people with disabilities that maybe couldn’t go in with the regular stream but they were still included in the same school building. Whereas a lot of times in Japan, up until recently, a lot of people have been, you know, they go to separate school. And sometimes unfortunately, it would be just because of physical disability not necessarily to do with an ability to learn. And so somebody with (a) normal ability to learn, would be going to that school and would have to wouldn’t be getting the same education as at a regular school. Now things are changing, there are obviously exception to those things, but um… I think a lot of times a lot of the kids are more in the sheltered kind of life here than they are maybe in Japan, or sorry than in Canada. Recently on the news actually, for children with disabilities that are maybe five or six years old but they have trouble walking and they’re not quite big enough for a wheelchair. So they’ll use some sort of special adapted stroller. But because it’s not really something that was really recognized in Japan they wouldn’t get the same help as somebody in a wheelchair even though it was necessary So if they go to a station, the station attendant wouldn’t help them with the slope or something like that. And they’d get a lot of looks because why is this big kid in a stroller? So there’s been a campaign to make these little stickers to put on the stroller wheelchair. To raise awareness so… People are getting out and more involved now but there are some ways I think it’s not as advanced or progressive as Canada is. In comparison to other societies, Japanese like to follow rules This means a well organized society but at the same time it can mean it’s difficult for people to bend the rules for special cases. And I’ve come across a couple times where it’s maybe not necessarily following the rules but if they let me do this them I can enjoy whatever it is I’m trying to enjoy in the same manner as everybody else. but it’s just a little bit different, but, ah, you know, because the staff know the rules and they’re maybe not in a position to make the decision on their own they’ll just be hesitant to try and they’ll just say no instead. For example I went to a train museum and I wanted to look at this one display where they’re having a show for these mini trains or something and I wanted to just go up to the display and look at it but i was told by the staff, no, no, people in wheelchairs watch from here. And I say, but the show hasn’t started yet. And so I just want to go look, I’ll come back, don’t worry. And, yep, yep, nope, but you know if there’s a fire… or something happens then you’ll get in the way of other people. And even if there’s the plenty of room and there’s barely anybody there and it’s just those the rules and that person didn’t feel they had the authorities to say, ah, it’s ok, you can go. You know where as, maybe in places like where more individuality and taking a lot more personal responsibility they’d be like, ah, it’s ok, you can go for it, I understand. In Japan sometimes you come across like… I don’t think we can do that because we’ve never done that before and so we don’t want to try. Which can be a bit difficult for people with disabilities, with different disabilities particularly. In Japan, just because of the living conditions of, you know, everybody, There’s not a lot of space, especially in Tokyo. So maybe people who are used to North American sized buildings might be surprised by the the compactness of stores here and that can cause a bit of a problem sometimes if you’re in a wheelchair because you just can’t get through. If you go to a Japanese style restaurant in a brand new office building or something like that they’ll often have a step that they’ve artificially built there because it feels traditional. It can be a bit sad sometimes when you want to go out somewhere and you can’t get in even though it’s a new building and you should be able to get in When I was diagnosed with my disease there were no elevators at my station. So, but, (when) I began to use (a) wheelchair when I was 26 years old, in 2006, they installed an elevator. So it’s very good for me to go outside using public transportation. So it became easier to go outside for wheelchair users. It became accessible. And 2020 there will be held Olympics and Paralympics, so Japan will be more accessible. Yeah I think that Canada definitely has an image as being a very progressive country and I think it is for sure. But Japan, while it was playing a bit of catch-up, I think it’s even surpassed Canada now, in many ways. For example, I can use a lot of the Japanese services for having personal care attendants come. And I get actually more time than I was getting in Canada. In addition to that I think the biggest thing, for me anyways, is I was living in the country in Canada out in the middle of nowhere and if you don’t have a car then you can’t go anywhere. And everything depends on asking people for rides and on top of that if you use a wheelchair then you have to have an adapted vehicle which can cost maybe $80,000 or a hundred thousand dollars. And sometimes you get money from the government but it’s only maybe $20,000 or something like so you have to pay the rest yourself. So you’re really limited in where you can go and everything. Where as when I came to Japan, living in a big city, with an incredible infrastructure for getting around in trains and such, it’s really opened up a lot of my world here and so I can go to so many different places by myself. And live a very full life here. As much as there are great facilities in Japan, knowing how to best access them can be a challenge Yuriko recognized this and entered a Google Impact Challenge contest I got grand prize from Google Impact Challenge, so that is financial support. I want to build new application, app, for wheelchair users. The idea is a barrier free and accessible map which will be created by collecting user submitted data on barrier-free routes and facilities. In this project I learned a lot about what it’s like to live with a disability in Japan and the government supports in place. Much has changed in the past 20 years, and in fact, just in 2016, a new law to eliminate discrimination against people with disabilities has been enacted. Some have felt that the new law doesn’t go far enough. But I do think it’s a sign that changes are going in a positive direction. Living in Japan with a disability is by no means perfect, but it’s good to see that the advocacy work of people like Josh, Yuriko, and Tsuchiya-san are improving things. When you’ve never tried something before, you don’t think you can do it. We want you to challenge yourself and try things you can’t do. You’ll then realize it’s not that hard to do, and there was no reason to have not tried before. We want them to realize that making a small step is really important. That’s what I think. If you just don’t try taking a small step forward, you’ll just give up on one thing after another. I want to share our experiences with them and continue to improve our services. I’d like to give special thanks to Yuriko, Josh, Tsuchiya-san, and Adachi-san for letting me interview them. Also thanks to Agatha for assisting me. Yuriko has a great series on YouTube about traveling around japan and the world in a wheelchair, so make sure to check it out! Josh is the guy behind Accessible Japan, which is an English site that helps people with disabilities navigate Japan. So make sure to check that out too! And thanks to all those who have supported these documentaries on Patreon. As always, thanks for watching, and I’ll catch you on the flip side!